by Amy Norton, Healthday Reporter
(HealthDay)—Few U.S. adults with sickle cell anemia are getting a recommended medication that can help them manage pain, breathing problems and other debilitating symptoms, according to a new study.
Using a national database, researchers found that less than one-quarter of sickle cell patients who should have been taking a drug called hydroxyurea actually were.
"This is a medication that's highly beneficial and yet most people aren't getting it," said Dr. George Buchanan, a sickle cell expert, and a professor at the University of Texas Southwestern Medical Center at Dallas, who was not involved in the new study.
Findings from the study were reported in the April 28 issue of the Journal of the American Medical Association.
Sickle cell anemia is an inherited disease that mainly affects people of African, South American or Mediterranean descent. In the United States, about one in 500 African-American children are born with the condition, according to the U.S. National Heart, Lung, and Blood Institute (NHLBI).
The central problem in sickle cell is that the body produces red blood cells that are crescent-shaped, rather than disc-shaped. Those abnormal cells tend to be sticky and can block blood flow—causing symptoms such as fatigue and shortness of breath.
Many people with sickle cell also suffer sudden bouts of pain due to poor blood flow. And according to treatment guidelines released last year, adults who have three or more pain "crises" within a year should be prescribed hydroxyurea.
Hydroxyurea was originally developed as a cancer drug, but it treats sickle cell by prompting the body to make fetal hemoglobin—an oxygen-carrying protein in red blood cells. That, in turn, helps keep red blood cells from becoming stiff, sticky and crescent-shaped, according to the NHLBI.
"My own view is, the vast majority of people with sickle cell anemia should be taking hydroxyurea," said Buchanan, who helped develop the latest treatment guidelines.
He added that people who work in the field have long known that hydroxyurea is underused, but this study offers hard numbers.
"The findings are not surprising, but they're very disappointing," Buchanan said.
So why aren't more people who need it getting the drug? There are several issues, said Dr. Michael DeBaun, who directs the sickle cell treatment center at Vanderbilt University in Nashville, Tenn.
For one, DeBaun explained, there are few hematologists who specialize in treating sickle cell patients—especially adults. So people with the disease often see only a primary care doctor.
But because sickle cell is relatively rare, DeBaun said, most primary care doctors have little experience treating it.
Add to that the fact that they may know little about hydroxyurea. "It's a cancer drug," DeBaun said, "and most internists do not go through their training learning how to manage a chemotherapy agent."
Another issue, DeBaun said, is that many sickle cell patients are low-income blacks. Some may be uninsured or "under-insured," and possibly have no consistent health provider. Plus, they often live in areas, whether rural or urban, that lack specialists in the disease, DeBaun explained.
For the study, Dr. Nicolas Stettler and colleagues at the Lewin Group in Falls Church, Va., used a database with information on almost 27 million Americans' health insurance claims.
The researchers identified nearly 700 adults with sickle cell who fit the criteria for taking hydroxyurea. But based on their records, only 23 percent were using the drug within a year of their last pain crisis.
And that figure, Stettler said, may actually be an underestimate of the problem, because it doesn't account for sickle cell patients on Medicaid or the uninsured.
The results underscore a need for education, for both doctors and patients, according to Stettler.
He suggested that people with sickle cell ask their doctor whether they should be getting hydroxyurea, or any other therapies in the treatment guidelines—which are available online.
Hydroxyurea is not without risks: It can lower the number of white blood cells and platelets in the bloodstream, which could leave people at risk of infections or bleeding. That means patients have to get periodic blood tests, Buchanan said.
But in general, he stressed, hydroxyurea is considered a safe and effective drug.
According to DeBaun, broader efforts are needed to raise awareness of existing sickle cell treatments, and spur more research into new ones. He said sickle cell patients need more-vocal advocacy groups, and more attention from policymakers.
"Care could improve if more health care resources were allocated to sickle cell," DeBaun said.
Explore further: Research reveals high prevalence of sleep disordered breathing in adults with sickle cell
More information: The U.S. National Heart, Lung, and Blood Institute has the latest sickle cell treatments.
Copyright © 2015 HealthDay. All rights reserved.
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by Amy Norton, Healthday Reporter
Medication helps reduce painful episodes.
(HealthDay)—Few U.S. adults with sickle cell anemia are getting a recommended medication that can help them manage pain, breathing problems and other debilitating symptoms, according to a new study.
Using a national database, researchers found that less than one-quarter of sickle cell patients who should have been taking a drug called hydroxyurea actually were.
"This is a medication that's highly beneficial and yet most people aren't getting it," said Dr. George Buchanan, a sickle cell expert, and a professor at the University of Texas Southwestern Medical Center at Dallas, who was not involved in the new study.
Findings from the study were reported in the April 28 issue of the Journal of the American Medical Association.
Sickle cell anemia is an inherited disease that mainly affects people of African, South American or Mediterranean descent. In the United States, about one in 500 African-American children are born with the condition, according to the U.S. National Heart, Lung, and Blood Institute (NHLBI).
The central problem in sickle cell is that the body produces red blood cells that are crescent-shaped, rather than disc-shaped. Those abnormal cells tend to be sticky and can block blood flow—causing symptoms such as fatigue and shortness of breath.
Many people with sickle cell also suffer sudden bouts of pain due to poor blood flow. And according to treatment guidelines released last year, adults who have three or more pain "crises" within a year should be prescribed hydroxyurea.
Hydroxyurea was originally developed as a cancer drug, but it treats sickle cell by prompting the body to make fetal hemoglobin—an oxygen-carrying protein in red blood cells. That, in turn, helps keep red blood cells from becoming stiff, sticky and crescent-shaped, according to the NHLBI.
"My own view is, the vast majority of people with sickle cell anemia should be taking hydroxyurea," said Buchanan, who helped develop the latest treatment guidelines.
He added that people who work in the field have long known that hydroxyurea is underused, but this study offers hard numbers.
"The findings are not surprising, but they're very disappointing," Buchanan said.
So why aren't more people who need it getting the drug? There are several issues, said Dr. Michael DeBaun, who directs the sickle cell treatment center at Vanderbilt University in Nashville, Tenn.
For one, DeBaun explained, there are few hematologists who specialize in treating sickle cell patients—especially adults. So people with the disease often see only a primary care doctor.
But because sickle cell is relatively rare, DeBaun said, most primary care doctors have little experience treating it.
Add to that the fact that they may know little about hydroxyurea. "It's a cancer drug," DeBaun said, "and most internists do not go through their training learning how to manage a chemotherapy agent."
Another issue, DeBaun said, is that many sickle cell patients are low-income blacks. Some may be uninsured or "under-insured," and possibly have no consistent health provider. Plus, they often live in areas, whether rural or urban, that lack specialists in the disease, DeBaun explained.
For the study, Dr. Nicolas Stettler and colleagues at the Lewin Group in Falls Church, Va., used a database with information on almost 27 million Americans' health insurance claims.
The researchers identified nearly 700 adults with sickle cell who fit the criteria for taking hydroxyurea. But based on their records, only 23 percent were using the drug within a year of their last pain crisis.
And that figure, Stettler said, may actually be an underestimate of the problem, because it doesn't account for sickle cell patients on Medicaid or the uninsured.
The results underscore a need for education, for both doctors and patients, according to Stettler.
He suggested that people with sickle cell ask their doctor whether they should be getting hydroxyurea, or any other therapies in the treatment guidelines—which are available online.
Hydroxyurea is not without risks: It can lower the number of white blood cells and platelets in the bloodstream, which could leave people at risk of infections or bleeding. That means patients have to get periodic blood tests, Buchanan said.
But in general, he stressed, hydroxyurea is considered a safe and effective drug.
According to DeBaun, broader efforts are needed to raise awareness of existing sickle cell treatments, and spur more research into new ones. He said sickle cell patients need more-vocal advocacy groups, and more attention from policymakers.
"Care could improve if more health care resources were allocated to sickle cell," DeBaun said.
Explore further: Research reveals high prevalence of sleep disordered breathing in adults with sickle cell
More information: The U.S. National Heart, Lung, and Blood Institute has the latest sickle cell treatments.
Copyright © 2015 HealthDay. All rights reserved.
Medical Xpress on facebook
Related Stories
Sickle cell disease, sickle cell trait are not the same
(HealthDay)—Both sickle cell disease and the condition known as sickle cell trait are genetic blood diseases: You're born with one or the other because of the genes inherited from your parents. Beyond that, the two conditions ...
Research reveals high prevalence of sleep disordered breathing in adults with sickle cell
A new study in the Journal of Clinical Sleep Medicine revealed that 44 percent of adults with sickle cell disease who report trouble sleeping actually have a clinical diagnosis of sleep disordered breathing, including sleep ...
Drug treatment means better, less costly care for children with sickle cell disease
The benefits of hydroxyurea treatment in people with sickle cell disease are well known—fewer painful episodes, fewer blood transfusions and fewer hospitalizations. Now new research from the Johns Hopkins Children's Center ...
Stem cell researchers develop promising method to treat sickle cell disease
UCLA stem cell researchers have shown that a novel stem cell gene therapy method could lead to a one-time, lasting treatment for sickle cell disease—the nation's most common inherited blood disorder.
Researchers engineer custom blood cells
Researchers at Johns Hopkins have successfully corrected a genetic error in stem cells from patients with sickle cell disease, and then used those cells to grow mature red blood cells, they report. The study ...
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New material for creating artificial blood vessels
Blocked blood vessels can quickly become dangerous. It is often necessary to replace a blood vessel – either by another vessel taken from the body or even by artificial vascular prostheses. Together, Vienna ...
Nerve cells and blood vessels in eye 'talk' to prevent disease, study finds
A new study from scientists at The Scripps Research Institute (TSRI) shows that nerve cells and blood vessels in the eye constantly "talk" to each other to maintain healthy blood flow and prevent disease.
Self-assembling biomaterial forms nanostructure templates for human tissue formation
Unlike scaffold-based methods to engineer human tissues for regenerative medicine applications, an innovative synthetic material with the ability to self-assemble into nanostructures to support tissue growth ...
More power to the mitochondria: Cells' energy plant also plays key role in stem cell development
Researchers at NYU Langone Medical Center have discovered that mitochondria, the major energy source for most cells, also play an important role in stem cell development—a purpose notably distinct from ...
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Prenatal stem cell treatment improves mobility issues caused by spina bifida
The lower-limb paralysis associated with spina bifida may be effectively treated before birth by combining a unique stem cell therapy with surgery, new research from UC Davis Health System has found.
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